Ayaan Jariwala, an 11-year-old artist, dominates the world of paintings as he plays with lines, shapes, and colours. An ardent listener of ancient stories and a keen learner of geographical maps, Ayaan builds his own fictional cities with a vivid imagination and ingenious thinking.
Ayaan’s school teachers could see a budding artist in the young chap. Thus, they roused his parents, Mrs Sandhya Jariwala and Mr Zubair Jariwala, to exhibit his paintings. His painting, The Rainbow Farms, grabbed the first prize in a competition conducted by Water World Museum, UNESCO.
However, despite his artistic superpowers, Ayaan fights a war daily. When Ayaan was four years old, he was diagnosed with Duchenne Muscular Dystrophy (DMD). Due to the genetic disorder, Ayaan has been in wheelchairs for the last two years.
After consulting doctors and physiotherapists, his parents learnt that there was no treatment for his situation. However, after resorting to prayers and hope, a drug called ‘Viltepso’ proved to be a ray of sunshine for his parents.
Introduced in USA and Japan, the remedy can prevent further deterioration of the health of DMD patients (specifically for 53 exon skipping kids). However, the treatment comes with a cost.
The Jariwalas told Team VOI that the medicine costs ₹25 crores, a price that Ayaan’s parents can’t afford. However, the family remains hopeful, and they are proud of Ayaan.
What is DMD?
It is a genetic disorder caused by mutations in the dystrophin gene. In this, the patient loses the ability to walk. It progressively increases weakness and muscle degeneration because of alteration in a protein called dystrophin. If not treated on time, the patient experiences difficulty in cardiac muscles, respiratory muscles, spine, and bones.
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